Having had Hodgkin’s lymphoma when he was sixteen, Joshua May has intimate knowledge of the inside of hospital wards, and of how incredibly short life can be. He says beating the illness during his teen years taught him to appreciate what he has, and he tries to live every day with this attitude.
But there’s something worse, to Joshua, than having cancer. It’s what he has now. New Daily Persistent Headache Disorder, a condition which is exactly what it sounds like: a headache that never goes away. One of the ways in which NDPHD gets diagnosed is the patient can pinpoint the exact date their headache began. Joshua’s headache started on March 14, 2003. He has now had it for 5286 consecutive days.
He compares the chronic pain of his headache to cancer–and thinks the cancer was easier in many ways. For one, it’s easier for others to understand. They know it’s Bad™. Doctors also know what causes cancer, so there’s a treatment path. Not so with NDPHD, which is defined mostly by symptoms, not causes.
“With cancer, there’s an obvious treatment path. People empathize with you when you’re bald and vomiting. You’re allowed to take time off work, or just, like, life. Cancer is visible on scans, so doctors take you seriously. And there’s advocacy groups and support groups and, hell, entire teams of researchers trying to work out how to fix people with your problem in even better ways.”
“But if you try telling people you have a headache,” Joshua points out. “Well, you’re never going to get the same reaction.”
Joshua is a software engineer in Berlin, Germany, working on products like the menstrual tracking app Clue, and Taxfix, a tax refund site. The job is flexible around his health, and he manages his pain with a mixture of medication and biking outdoors. But having an invisible illness presents a range of challenges, access to medication being one of them. He’s lived and worked in five countries across three continents, but every time he moves, he has to start over with new doctors and new healthcare systems.
“Even within the same system, there are so many different factors. A young doctor versus the older doctor at the same practice can have vastly different attitudes to what they’re willing to ‘believe’ and how far their compassion can bend. My only real success is trying, trying, trying until I find someone that will listen. That’s probably something 99% of people with chronic issues can relate to. Unfortunately it’s only getting harder as ‘the painkiller epidemic’ [focused on opiate use] spreads everywhere.”
Along with the difficulty of being believed by doctors and accessing appropriate medical help, Joshua says chronic pain interferes with interpersonal relationships. “I find it hard to say ‘I’m having a bad day… again’,” he says. “Everyone has a suggestion on how to “fix” your problem. My pain is unpredictable and unique and it’s probably going to get worse, which is really isolating.”
Romance is also difficult. The four little words “I’ve got a headache” have become such a well-known excuse for not wanting to be intimate that our society has literally turned them into a punchline. But losing his interest in sex has killed at least one relationship for Joshua. “It became breaking point, unfortunately. I did a pile of tests to see if anything else was affecting my libido. Nope, testosterone fine, everything checked out. It’s literally all in my head.”
It’s always hard to get out of bed with a headache, but Joshua says waking up every day with one is enough to drive anyone mad. “It’s one thing to wake up with a headache, but knowing the second you sit up, you’ll get a rush of blood and it’ll cause your head to throb. And that’s just the start of the day. If I could just have an hour of respite to get the day going, I feel like so much would be easier.”
It sounds like hell. But having had cancer taught Joshua a lot about not giving up, and understanding when you’re making progress with an illness. Not all of your milestones are epic, but they add up: you need to celebrate them all the same.
“I remember the day I realized [the chemotherapy] was working. I had my first treatment on a Friday, where I couldn’t eat a bit of cheese without choking. By the Tuesday after, I was able to eat a proper meal without any real issue. You couldn’t wipe the smile from my face that day!”
But neither chronic headaches not cancer are going to get in the way of Joshua living his life to the fullest.
“I think my adult life is heavily tinted with a general idea that you can’t put off happiness until retirement. I wouldn’t be surprised if I don’t make it retirement, due to the chemotherapy, so I have to live my life while I’m here. It’s a good reminder to make everything worthwhile. Don’t waste your life causing problems. Just try to do good things.”